Not Just Surviving, but Thriving
Learning to live with Ehlers-Danlos Syndrome, or EDS, is a continuous process. Over the past few years, I've come to the realization that I don't just want to "survive" being chronically ill. I want to thrive while being chronically ill. While I've accepted that my illnesses present many barriers to what I'm able to do and how I'm able to do it, I won't accept that as a dead-end. I've been motivated, ambitious, a perfectionist, and passionate since I was a little girl, and though being ill has changed my life, it will not change that about me.
Accepting that you will have to live with chronic illness for the rest of your life can be a threatening thing. It's scary enough not knowing if I'll be able to function properly tomorrow, let alone think about what my life and illness will be like in five or ten years. This unknown and unpredictability of chronic illness is frustrating and intimidating, so I've decided that I'm going to take control in my life in ways that I am able to. While I can't control how my illness affects me, I can control how I deal with it. Some days, my pain or fatigue is so severe that I am not able to get out of bed. Other days, I'm able to go shopping with friends or attend a concert. I've decided that I will take advantage of both of these situations. In regards to days where I feel so badly that daily tasks are difficult, I've come to the realization that rest is the best thing to do for my body. I've had to reframe the way I think of rest, and remind myself that I am not being lazy, but that I'm taking the time I need to recover so that I can be successful. In regards to days where I have more energy and feel better, I've decided that I will do all I can to make sure that that continues.
In middle school, I fell in love with yoga. At the time, I did not realize that I was so good at it because of hypermobility from my EDS, but I loved the peace and the exercise that yoga provided. Since then, many doctors and physical therapists have told me to never do yoga again. Recently, Kendra Neilsen Myles has helped me realize that I can still do what I love and make it work for my body. When I first attended one of her restorative yoga classes, geared towards people with EDS and hypermobility, I was so excited to reclaim one of my passions. During this class, hosted at the Mindfulness Center in Bethesda, I learned how to do yoga while protecting my hypermobile joints from dislocation. But more importantly, I learned that having EDS did not need to limit me. While I do have to avoid certain activities and make certain accommodations to my daily routine, I am realizing that I don't have to stop doing the things I love. I just have to careful and patient with myself.
Five years ago, Kendra founded EDS Wellness, a non-profit organization that aims to promote "health education, integrative healthcare, and wellness strategies for living well with hypermobility syndromes, such as Ehlers-Danlos syndrome (EDS), connective tissue diseases, and related comorbidities." Kendra, who also has EDS, created EDS Wellness to share her philosophy living with EDS. Kendra does not consider herself "chronically ill." While she acknowledges that she has EDS, and that its sometimes severe and debilitating symptoms affect her life, she does not let it get in the way of living her life. Kendra believes that remaining active, in any way you can, and remaining hopeful are the keys to health. While she does not necessarily consider herself an advocate for EDS, or claim to be the authority on living with EDS, she knows the value of healthy and active living on chronic illness, and wants others to discover it too.